Additional Needs
Puberty has landed
by Carolyn Voisey
on 11th April, 2024
Special Needs Parenting: Three Years Ago Today
What I didn’t know then was that she would never start eating again – not orally, anyway.
And what I didn’t believe then was that it would be OK.
When Miss Z stopped eating three years ago, it ripped my heart out.
Although it has been one of the most manageable challenges we have faced, it was also one of the most difficult for me to come to terms with.
After all, if you, as a mother, can’t feed your child, you’ve failed, right?
Providing them with food is not only a way to sustain and care for someone, but it is a sign of love.
What do you do when your child simply refuses it?
Previously, Miss Z had been an enthusiastic eater.
She hadn’t progressed beyond purees and the occasional soft food like tiny pasta shapes or little chunks of banana, but I expected that her eating would improve over time.
And in the meantime, I threw myself into making purees every weekend, buying healthy, organic food and searching the Internet and my Annabel Karmel cookbooks for new and creative puree ideas.
Miss Z wolfed most of it down, only occasionally showing her dislike of certain foods, such as avocado.
The height of my feeding achievement was on Pancake Day, when Miss Z ate a whole pancake.
I have a photo of Miss Z and her sister, sitting side by side with their pancakes in front of them, about to tuck in.
Six months later, I had posted the photo of Miss Z with the naso-gastric tube on Facebook.
Miss Z had stopped eating purees and was refusing bottles and her meds.
During that long and exhausting hospital admission, I wracked my brain for reasons why Miss Z had stopped eating.
Had I pushed her too far, introducing chunkier foods?
Or was I feeding her wrong – too fast, or at the wrong time?
Should I have continued breastfeeding for longer?
Was I wrong to mix her medications in a bit of yoghurt to get her to eat them?
And I deployed all sorts of strategies to get Miss Z to start eating again.
Sometimes, she would suck on a bottle if I got it in her mouth when she was asleep.
So, I would wake up every two hours during the night to try to feed her.
I added chocolate powder to her milk to make it taste better.
Every time she opened her mouth, I would be there with a spoonful of puree.
Nothing worked.
Instead, she clenched her jaw and turned her head away.
The times when I did manage to get something in her mouth, she would cough and gag until it came back out.
Giving her medication was the worst.
I would have to hold her down and syringe them down the back of her throat, then hope and pray she wouldn’t choke or vomit them back up.
Three years ago today, I was in an emotionally and physically exhausting place, out of my mind with anxiety about the fact I couldn’t even manage to keep my child hydrated.
And hanging over it all was the dark cloud of regression – that Miss Z was losing the ability to eat, and in fact, the ability to swallow.
I wish I could tell my three-years-ago self that it would all work out in the end, that by January, Miss Z would have a PEG – a feeding tube surgically inserted in her tummy.
And, although three years ago I had thought that a PEG would be a sign of failure, in fact it has been one of our greatest successes.
For me, the PEG (which was later converted to a mickey – a “low profile” type of feeding tube) means that I know she is getting exactly the nutrition she needs to grow and thrive.
It means that there is no fight over taking her meds – she hardly notices when I give them and I know that she’s getting the full dose.
It means I can make sure she gets enough water, especially over the summer months and when she’s sick.
And after three years of tube feeding, I can do it all in my sleep – quite literally, since I’ve done it all in the middle of the night and barely opened my eyes.
For Miss Z, it means no more stress at feeding times, no more being held down and forced to swallow medications.
And it means she is safer, because as her swallow deteriorated, she began aspirating liquids into her lungs and up her nose.
She is a much happier, healthier child today thanks to her feeding tube.
And the tube doesn’t mean that she can never have food orally.
We still try to tempt her with tastes of custard and yoghurt and veggie purees.
She isn’t interested, but that doesn’t mean she won’t want to try them someday.
And in the meantime, she gets smoothies and juices through her tube if we’re all having them and I don’t want her to miss out.
Three years ago, I was facing some difficult times.
I wish I had known then that Miss Z’s feeding problems weren’t because I was a bad mother, or because she was being stubborn, for that matter.
And that a feeding tube wasn’t a sign of failure, but rather the best thing for us.
